Paget's Disease of the Breast

Lorri70

yes a nipple tattoo will be done in the hospital I wish I had a fast forward button, I'm trying to look on the positive side but I'm finding it very difficult the dr emailed me confirmation that he will do the operation next Thursday I'm glad but it makes it all very real thanks for your support,

xxbunkxx

Hi ladies!

Hoping to gain some insight based from your experiences and I apologize for how lengthy this post will be. Here's my story leading up to this point...

In April 2016( 6 months ago), I began noticing my left nipple being very sensitive, often tingling. I also began having periodic leaking that I chalked up to breastfeeding. At this point, I had NOT been breastfeeding for a year. Upon observation, I realized it was not milk but clear discharge.

June rolled around and I began having intense itching on left nipple. Nothing seemed to relieve the need to itch. My bras began sticking to my nipple and my skin had started flaking all in and around the nipple. The skin directly in and around nipple became reddish, tough, and almost textured.

For the next two months I attempted to use:

Lanolin, Neosporin, silver sovereign, and 2 kinds of eczema creams. They all resulted in no change.

By the end of August 2016, I made an appointment to see my OB. She immediately brought up possibility of Pagets and gave me script for mammogram and ultrasound. In addition, I was given a script for amoxicillin. After completing the dose, there was NO change.

Both tests came back clear. I was then ordered to have a ductogram on left nipple. That also produced little insight. They did not find any masses, papillomas, or calcifications. One area was noted as having asymmetries and being denser but they said very normal given my age, 31.

I was referred to a breast surgeon and after examining me, we both agreed that a biopsy was needed. He also said that he'd like to remove the entire ductal system on the left. In removing it, he said it would solve the issue of discharge and in the process the biopsy would hopefully give insight as to whether there were any cancers.

At this point the left side only had been having symptoms 5 months. 2 days after meeting breast surgeon and setting up my surgery- my right nipple began to show the same symptoms. At the end of the night I went to change into my pajamas and noticed my right nipple having a bloodish oozing. In addition there was a small white blister. I described the oozing as when you've fallen and skinned a knee and blood comes to the surface. There were not drops of blood but an oozy, blood was coming to the surface. Nothing had happened during the day to cause this( itching, trama, etc.)

I called the breast surgeon the next day and was sent for another ductogram and ultrasound. By this point I was not having discharge and could not do the ductogram. My ultrasound came back clear.

I met again with my surgeon the following week and he thought it best to hold off on surgery. He said all signs leading up made sense because it was only my left side. Now with the right side experiencing the same symptoms, he wanted to look into all other diagnostic testing.

I am set to have a bilateral breast MRI next week. One of his possible theories at this point is a prolactinoma pituitary tumor. He said it can cause abnormal nipple discharge. He said the chance of having Pagets is SO rare, let alone in both nipples. It seemed like everything was pointing in Pagets direction until both side became effected. He is still not opposed to doing a biopsy in both breasts but wants to look further incase something else is the culprit.

I guess I'm looking for any stories of anyone with a similar story. I've read it's very rare to have Pagets in both nipples but there have been cases.

Thanks for any replies... If anyone has made it through my novel here! Ha!

lou23

Hi, sorry to hear your story you must be very worried. It does sound like the symptoms that I had but only in my left breast., I was also told it would be very rare to have Pagets in both breasts especially at the same time. Mine didn't show up with a mamagram nor a MRI. The biopsy came back positive and I think you will find most people with pagets it was diagnosed this way.Wishing you good luck next week let's hope it's nothing serious. Try not to worry , I know this is easier said than done.

Lou.

Lorri70

xxbunksxx, I'm sorry to hear this, I'm only recently diagnoised having surgery next week, I've Paget's in left breast only I didnt have any discharge slight itching not bothering me really small redness on side of aerola not whole thing or on nipple only but very red and angry looking but the area is spreading now I can see and it didn't get better noticed round Christmas,I was diagnoised from biopsy actually I'd 2 to be sure mammogram and ultra sound clear, have you had a biopsy to confirm it I believe that's the only way to confirm it.

xxbunkxx

Thank you for taking the time to read and respond. No biopsy yet. Originally, my surgery was scheduled for tomorrow but has been put on hold with both sides being effected. It's just odd to me that the left side has been effected for 6 months prior to right side showing a single thing. I know the biopsy is only way to diagnose Pagets and am hopeful that my drs will still end up doing on both sides. I think it'll be the only way I can be at ease. This is very scary being nearly 32 with small children. I just want answers and quickly. If only the medical world worked that way:)

Maya15

Hi xxbunkxx, this is such a frustrating time before you get answers. The tests are the most stressful part of this whole thing. It sounds like you're getting really good medical care. MRIs are more sensitive than ultrasound and mammos, so that will be useful, and it sounds like your surgeon will still do a biopsy if the MRI shows no tumors.

It's really good news that your tests so far have been negative. If there was an invasive underlying cancer, it probably would show on the ultrasound. This means even if you did turn out to have Pagets, by itself it is stage 0 and can't spread outside of the area where it is.

Lorri70

well the time has almost come I'm having a wle tomorrow morning nipple removal I really wish it didn't have to happen but it does I'm feeling ok I really want this out now. I was having pre op in hospital bloods done and all those things today there is cancer counselling there so I called in there before I left they were very helpful my dr also called me this evening she is my age more or less and had breast cancer I am still dreading that they might not get clear margin and what else they might find my dr told me I'll need 6-12 months off as well as psychologically I'll need it I was thinking I'd be going back in January 🙁Is that the norm

glennie19

6-12 months off? Off work? Wow, things are different in Ireland. I was back at work 4 weeks after my mastectomy, but I have a desk job. Do you have a physically active job?

Will be thinking of you tomorrow. Please let us know how you are doing when you can.

glennie

Lorri70

yes I think things might be different over here that's why the country's in such a state, tbh I think that's a bit excessive for me to need 6-12 months off work, my dr herself had breast cancer and I know she came back and had to leave again, Maybe that's why she said that to me i won't take that much time, I also have a desk job.

My operation went well it was a full on day left at 630 hospitals an hour away had operation I was very upset in the room where they put you to sleep the nurse said to focus on reason I was having the operation.dr said it went well removed nipple did a cone biopsy please God it's all removed go back to him in 2 weeks waiting again I got home at 730 had tea and toast went to bed see bit sore today bit tired but ok

glennie19

Glad the operation went well, and that you are home. Hope the time flies by for your postop checkup and you have clean margins.

lou23

Yes glad you have had the operation, fingers crossed you on having clean margin. I had a week off work after nipple removed but a month after masectomy, but to be honest I should have took longer. Let us know how you go on.

All the best

Lou.

Suz1975

Hi everyone. Well I had my Lumpectomy and nipple removed and SNB. Results came IDC 1.3cm with clear margins. No node involvement. BUT I have 10+cm of dcis that was connected to the Pagets still humming away in there. I opted for a DMX booked this Friday, but I'm having doubts. It was suggested I might be able to delay the mastectomy and do chemo first. I would have time to consider my options more.

But today I'm concerned the Pagets is popping up on my skin. I have a sore right near the incision where my nipple was. There was a hair there which has disappeared but it's not just ingrown, it feels like my pagets symptoms.

I'm waiting to talk to the oncologists but I probably can't get onto him before surgery.

Jedrik

You should have someone look at the incission, just to make sure it's not infection causing the symptoms.

Pagets ist more often Her2+ than not. If that is the case you will most likely be offered chemo and antibodies. And if you do chemo it makes sense to do it before further surgery because then you can see if it works.

They just removed sentinels before my chemo. My affected nipple stopped weeping and the surrounding skin healed right after the first cycle.

lou23

Hi, After my lumpectomy I knew that my pagets was still there. It was showing on my incision. I told the doctor before he told me they hadn't got a clean margin. Hope all goes well for you. I had mx but needed no chemo or radiotherapy.

Good luck

Lou

Lorri70

oh no are you serious I assumed the Paget's goes as soon as the nipple is gone I can't believe it can be still there when the nipples been removed, I had my operation on Thursday I didn't know it could still remain I asked my dr was Paget's gone now nipple was removed he said yes I was worrying about the dcis not being all gone I've to wait 2 weeks

lou23

No unfortunately it's rare but Pagets can still be there. Sorry. My specialist thought it couldn't happen also, fingers crossed you are ok, mine actually didn't show a clean margin.

Lou.

Lorri70

I just feel like throwing in the towel, I can't believe you have nipple re,over and it may still be present. My dr told me he removed a large area all around my nipple so I hope he removed enough, I was thinking maybe the dcis would still be there suz1975 maybe it's an infection fingers crossed this really is a night mare it just gets worse

lou23

lorri, if you had clean margins it should be fine, mine hadn't.See your doctor to see if its an infection asap.

Lou.

Suz1975

I don't think he took enough... i need to read mu lab results to check, but I'm on antibiotics now to see if that helps. I'm getting really pissed off that I wasn't offered to see an oncologist before surgery. I know surgery first seems to be standard practice here, but from everything I've read it seems that chemo before surgery is a good option. I'm now left with a smaller breast and no nipple, and possibly still pagets eating at my skin. At the very least I'll end up removing the other nipple and a reduction on the other side, if not a double mastectomy.

We should be given choices and options beyond surgery right from the get go. I may choose mastectomy, but it should be my choice. I was given no time to reflect or talk to an oncologist, just told we need to cut. The psychological effect of removing parts of us that we can never regain is massive. If the tables were turned and men didn't have to cut off their balls they definitely wouldn't jump straight to surgery like we're hearded into doing.

I'm ranting now sorry.

Lorri70

I haven't seen anyone else either except the breast DR,I've 2 more weeks to wait for results maybe longer as it's taken really long for diagnosis in the first place,my breast feels bit tingly as well but I think it's the healing process I hope so anyway, I'm still in shock to hear Paget's can still be present when your nipples gone,this is taking over everything it's my birthday today and I couldn't care less tbh,I too asked if I'd be better having a mastectomy for cosmetic reasons big slice gone my dr said no so I'm just going with that for the moment till results come back it's tough isn't it

Suz1975

Lori I'd suggest you ask for an oncology referral before making any further decisions. A few weeks isn't going to change anything. Mastectomy is a big step. I wish I had gone to my gp and demanded it earlier. Listen to your gut instinct and good luck.

Lorri70

Yes Suz1975,I'm not making any decisions, I've to wait for the tests to come back I think next week I'm praying for clear margins today I seem to be fine almost back to normal apart from tired had visitors all day. I'll be glad when I've had my results back hopefully just radiation no more surgery.

xxbunkxx

MRI results came in and the nurse said left side shows inflammation of tissue mass on and surrounding nipple area. I'm set up next week with breast surgeon next week to discuss what the next course of action will be. Anyone else's MRI show this?

Lorri70

just wanted to share I looked at my breast this evening it was what I was so dreading the first look,I'd mentally prepared myself I'd been looking at breasts with no nipples for weeks to prepare myself I was in bits about the first look but I'm very happy it wasn't bad actually I'm very happy the scar is whole way across but it's very neat it's a bit puckered on each end but I know that fixes itself after a few months cause 20 years ago I'd a lump removed was puckered at each end was small scar now it's not even visible.its only done a week no brusing my dr told me he'd do a neat job and that's exactly what he did just need clear margins now and I'll be absolutely delighted

xxbunkxx

I met again with the breast surgeon to discuss the next step. I am scheduled to have a wedge biopsy on both sides next week. Has anyone had? I'll be under general anesthesia. How painful was the aftermath and what was your scarring like? How long until you were called with results? Thanks ladies

lou23

Hi, mine was done with local anaesthetic and was very painful at the time. Uncomfortable after but no pain. Didn't look that bad after and took 3 weeks for the results. Hope all goes well for you.

Lou.

Lorri70

I got my results today good and bad news Paget's gone butdidnt get clear margins tiny bit of dcis left he said 3 cm in there just tiny bit left having another operation in 2 weeks I'm happy nothing nasty was found and that I'm almost clear

lou23

wishing you well for your next op.

Keep us posted

Xx

lessharp

Yes, best of luck Lorri!

Lorri70

just wanted to update my DR called this Evening and we got clear margins I'm so so happy, I will be going down to see him on Wednesday to talk about radiation and the next step I am delighted everything's been on hold I can now start planning for Christmas